This is MY journey with MS! I give you my thoughts, feelings, hopes, and prayers. My wish that one day this disease will come to an end. That one day there will be a cure. For now, I hold on to possibility. I HOPE this will help and inspire not only myself but others.

New Medicare Policies Restrict MobilityPeople with multiple sclerosis and other disabilities could lose mobility and independence under new Medicare policies that restrict coverage and significantly reduce reimbursement for power mobility devices. MS activists are taking action now, before these policies go into effect November 15, 2006.

MS Action Network members are calling and visiting legislators in their home districts during the electoral recess. The MS Public Policy Office is meeting with legislative staff on the Hill and partnering with other patient groups, such as the National Coalition for Assistive and Rehab Technology (NCART). And chapters are building grassroots support and raising attention with their local news media.

The Society is calling on members of Congress to ensure that the Centers for Medicare and Medicaid Services (CMS) revises these policies. New guidelines must be created to account for the progressive, functional needs of people with MS and other disabilities, as determined by medical experts. The increased burden on caregivers and other providers, as well as the disincentive to manufacturers, also must be carefully considered.

Don’t let people with MS lose mobility. Click here to take action now, and continue to keep an eye out for news coverage on this issue.

Click here to read what CMS is saying about the new Medicare power mobility device policies.Click here to view a video against the policies from the National Coalition for Assistive and Rehab Technology (NCART).

NIH Funding and Other Appropriations on HoldCongress made some progress on fiscal year 2007 appropriations last week, but failed to complete most of them before the end of FY 2006. Only two appropriations bills — funding Defense and Homeland Security — have been signed into law. The remaining bills will need to be finalized after the midterm elections or next year.

Congress passed a temporary spending bill — a Continuing Resolution (CR) — to provide ongoing funding at the FY 2006 rate for programs under the lingering appropriations bills. That includes the Labor, Health and Human Services (HHS), and Education bill that funds the National Institutes of Health (NIH), which is important in advancing research for people with MS. The CR is written to last until November 17, 2006.

Fight for FundingIn the meantime, members of the Senate and House are fighting for increased funding for medical research. Senators Specter (R-PA) and Harkin (D-IA) authored a “Dear Colleague” letter to Senate leaders seeking support for a $7 billion increase over the President’s request for education, health, and labor programs.

House moderates, led by Representative Castle (R-DE), also sent a letter to House Majority Leader Boehner (R-OH) urging him to keep his commitment to providing an additional $7.2 billion to the Labor, HHS, and Education bill. Currently, both the Senate and House bills fall short.

The MS Public Policy Office has furthered that effort by contacting key legislators and reminding them of the importance of NIH funding for people with MS.

After the ElectionsA “lame duck” session tentatively is scheduled to convene on November 13, at which time work is expected to resume on the remaining appropriations bills. Congress could pass all the bills, some of them, or enact another CR. Exactly what will happen depends in large part on the results of the midterm elections and any changes in congressional leadership. We will continue to keep you informed on this process.

Be an MS Activist … VoteElection Day is November 7, 2006. With many contentious issues and races across the country, it will be especially important for you to cast your vote this year. Click here for more information on voter registration and elections in your state.

Welcome Charles. I will stop by when I get a minute to check out your podcast. Every vote does count and the reality is that if we sit here and do nothing we have no one but ourself to blame. It is our responsibility to make sure that we get the benefits/services we need/are going to need due to MS. Jaime

About Me

I was diagnosed with MS in 2004, have been through all of the FDA approved treatments I qualify for and now am participating in the HALT MS Study. This is my story...my life with MS (among other things).